Using Photovoice Methods to Set Research Priorities With Autistic People With Experience of an Eating Disorder

Abstract

Objective(s): Autism and Autistic traits are heightened in individuals with eating disorders (EDs), with Autistic people reporting poorer treatment outcomes and experiences. Despite this, mechanisms of this overlap remain poorly understood, perhaps due to an exclusion of lived experience perspectives in setting research agendas. The study therefore sought to identify research priorities for Autistic people with an eating disorder (ED) by using accessible and inclusive arts-based research methodologies.

Methods: Research questions were explored using Photovoice, a creative research methodology involving the creation and discussion of images. 14 participants attended group workshops, in two of which they explored research priorities for Autistic people with an ED. Images and transcripts were analysed using an adapted Photovoice Question Matrix (production, content and meaning of the image) and thematic analysis. Participants had the opportunity to provide feedback on emerging themes before themes were finalised.

Results: Five themes were identified that highlighted research priorities for Autistic people with an ED: (1) Impact of early experiences (with subthemes Internalizing of socio-cultural food and body narratives and generational cycles); (2) Function of the ED (with sub-themes ED as a regulatory strategy and ED as a social acceptance strategy); (3) Barriers and facilitators to ED recovery (with sub-themes Autistic traits as barriers, Autistic traits as facilitators and Help and harm of unravelling); (4) Understanding and accommodating for complexity (with sub-themes Co-occurring conditions and Intersectionality); and (5) Changing research culture (with sub-themes Inclusive and participatory research and Nonclinical support).

Discussion: Study findings are contextualised within existing autism and ED research, highlighting avenues for future research and making recommendations for future research questions. By identifying community-driven research priorities, it is hoped that study findings will inspire novel, interdisciplinary and co-produced research that will serve as a meaningful evidence base towards improving the lives of Autistic people with an ED.

Keywords: autism; eating disorders; photovoice.

Image 1

“What you say sticks”. Production of the image: Camera. Content of the image: Space is used to emphasise the small child and their reflection as the centre of interest.

Image 2

“Stopping”. Production of the image: Camera. Content of the image: Light and form are used to emphasise the children; line and tone are used for contrast between the dark water and light of the sun.

Image 3

“Cognitive Plant”. Production of the image: Artificial Intelligence (AI). Content of the image: Line, colour and space combine to emphasise the brain as the centre of interest and repetition of beams, food items and towers.

Image 4

[Untitled]. Production of the image: Camera. Content of the image: Shape and tone are used to create contrast, emphasising the post‐it note.

Image 5

“Sensory Nightmare Pile Up”. Production of the image: Camera. Content of the image: Space and form is used to emphasise the bundle and to create asymmetrical content.

Image 6

[Untitled]. Production of the image: Camera. Content of the image: Line and colour are used to convey symmetry, balance and repetition.

Image 7

“I am Autistic, I am not my Anorexia”. Production of the image: Camera. Content of the image: Line and shape are used to create emphasis and symmetry.

Image 8

“One Category Fits All”. Production of the image: Drawing and camera. Content of the image: Use of space and symmetry emphasises the shared diagnosis, while colour is used to reflect possible variety in factors that can underlie the diagnosis.

Image 9

“Does anyone fit the mould?” Production of the image: Computer screenshot. Content of the image: Space and tone are used to create a contrast between negative/white space and the words.

Image 10

“Intersectionality”. Production of the image: Camera. Content of the image: Colour and line are used to emphasise different colours; form (of a flag) is used to emphasise unity.

Image 11

“Ginger Outcast”. Production of the image: Artificial Intelligence (AI). Content of the image: Colour and form are used to create contrast between the single red figure and the crowd of blue, and to centre interest on the single red figure.

Image 12

“Hello, Welcome”. Production of the image: Camera. Content of the image: Shape and line is used to imply balance and to create a contrast that emphasises the screen.

Image 13

“I just wanted to be at home with my cat”. Production of the image: Camera. Content of the image: Colour and form is used to create emphasis on the closeness of the cat and the home sign.